Month: December 2015

Ending my last Pilates session of #2015 with my instructor of two.five years, @oneknee😎

I was more regular with my sessions than I have ever been and that makes me feel really good. Even a tiny bit of improvement in the muscle tone makes me feel happy because I like to believe that my body is responding to how I look after it. Perhaps the #progress isn’t as much as I was wishing it would be but again, if how I looked was the gauge to the progress (and the kind of progress) I’ve made, it’s not going to be accurate at all.

With patience, understanding and support from just a few people, and with my personal effort, commitment and love towards my body, I’ve made progress on all levels – physical, emotional, mental and spiritual. This year, I’ve got another joint (that’s a grand total 9 joints affected) to worry about but I’m less fearful and more trusting of my body and its experience. I’m more accepting towards my constantly changing body because I realize that it is a physical manifestation of the experience I’ve had or am having. I see how just dealing with an illness is not enough – one needs to work on healing and growing with the illness too.

#2015 has opened me to so many #possibilities – ones which I was either afraid to consider or didn’t even know existed. Today, I understand that even if my life looks nothing like before, it looks fine. It doesn’t look bad. I had a chance to question what I really want out of life and though my goals and #dreams are still just evolving (re-evolving), I feel certain about the years to come. 2015 has given me the #opportunity to come to terms with my past, remember the lessons and grow from that place. We are nothing without our #story and there’s no reason to hide it. I can now look back, acknowledge what was and that this illness is a crucial part of my growth,and, continue writing a new ending.

Thank you to all those who’ve stood by me and have been a part of my #journe, and most importantly, thank you for giving me space to just simply have my experience. One Day At A Time.
Happy New Year’s Eve!✨

I’m usually very careful when it comes to calculating my medicines and making sure I always have what I need etc but I guess things do go wrong at times and you forget. I’ve had a lot of other things on my head lately so I understand and choose not to be harsh on myself for forgetting. When I woke up on Sunday and realized I’ve run out of my meds, I freaked out a bit but I thought it would be a good time to gauge my dependency on these tablets.

I was secretly hoping I’d be able to survive and feel good about it – in the past, I’ve had pretty serious withdrawal symptoms (I was told I’m even more sensitive to these than most others) to these tablets so being able to get through just a day meant a lot to me. These tablets are supposed to be slowly weaned off and not stopped abruptly. It seems it needs to be in the bloodstream constantly in order for it to do the work and help with the pain. I was rather hopeful about managing on that one day. It’s just one day. I thought hey, I know my body better. I’ve got other alternative therapy options. I can get through this. I’m sure I’ll be fine As you can probably guess, no. I wasn’t.

My health practically deteriorated through day and within two hours, I couldn’t function anymore. Pain went out of control, I had a short burst of palpitations and breathlessness, my heart started feeling heavy, my lower body refused to coordinate with me and I spent the whole day in bed.

That’s when I realized, no matter how much I do my part of working towards being independent, empowering myself as a patient etc, there will be times I need help. I’ve had a hard time becoming okay with needing help but I’m learning that asking for help doesn’t make you weak. I’m thankful I had a friend around to help me through the day because honestly, I’m not quite sure how I’d have survived otherwise. It also, obviously, proved a point – I’m not ready to live without medications yet.

Again, needing medication doesn’t make one feel great at all but coming to terms with the fact that maybe it’ll help you function and enjoy life at least a bit and work on your dreams is a decent perspective to adopt. Of course, medication is expensive as hell but without it, your place is only your bed. Dealing with so much pain and managing the stress associated with the finances is a very ugly aspect of chronic and rare illness. Not everyone gets it and not everyone will. The guilt that follows just because you need your medicines is absolutely unnecessary. It is something to work on I think – to realize you didn’t ask for this. It didn’t happen to you because life hates you. can My aim is to keep creating stability in my life so that one day, I’m able to live on a lower dosage – that’ll be epic. Until then, I have to come to terms with what is.

…. Here’s the good part, I have managed to reduce the other medicine by 1 pill. Instead of three a day, I’m now taking two – and trust me, I couldn’t have imagined lowering it back then. But I have now. And it makes me feel great. It’s extremely validating to the choices I’ve made over the last one year. They’ve been tough, mentally and emotionally and physically,of course. So to see an improvement, to FEEL some amount of overall balance and strength is an achievement. I couldn’t have asked 2015 to be any better. There’s still lots to work on, but I don’t expect learning to ever stop.

Thank you, 2015! You’ve really been amazingly kind. Thanks for all the things that fell in place and fell apart. All was meant to be for all of it is helping me move forward. Thank you for all those who believed when I said I know the best for me and thank you to those who thought they knew better – either ways, I’ve learnt a lot and I’m doing my best to figure everything out step by step. It’s happening at a rate of a body not meant for everyone to understand.

Jellyfish effect :- When my entire lower body, right from the start of lower-back all the way down to my little toes, becomes numb out of weakness and there is a fairly high chance of me just collapsing on the spot because my legs can’t hold me up.

It’s something to do with the nerve, I think. Two discs and tailbone sort of out of place really can affects you in ways you can’t always predict and prepare for. What happens is that I feel some sort of an electric current somewhere right at the start of the lumbar spine, shooting all the way down into my entire lower body, down till my toes. This isn’t the same as the sharp pain that I experience in a similar manner. This electric current, as it radiates down, causes sudden weakness in the muscles and I can’t hold myself up too well. I have had to cling onto things around me and drag myself to bed quickly before it gets worse.

The numbing effect too, is not the same as the numbing whereby you don’t feel anything at all, no sensation whatsoever or no pain. I still experience #pain and if someone were to help me up, I am still able to feel everything that’s happening… But I can’t do much about it.My feet turn icy cold. I don’t have enough physical #strength to help my lower-half up in any way at all. It’s like the signals from my brain won’t go past my lumbar spine!

What happens then is that my muscles in my lower body tense up further and start to do extra work to hold me but it’s not enough. That leads to extra weakness. Which leads to the muscles fighting even harder to hold me up. That’s the vicious cycle people with connective tissue disorders fight with all the time anyway. Then, my upper body has to go way beyond its job scope just to deal with this entire situation. Imagine having to grab hold of anything that’s around you to stop yourself from “melting” onto the floor.
It’s tiring.

Once I’m lying down, it can take anywhere from a few minutes up to a couple of hours to sort of regain the strength again. But then I still have to recover from the #fatigue of it all, which sometimes eats up my entire day. On such days, I need a lot of hot packs, #essentialoils and all things warm (like socks and a nice, fluffy duvet and oh, tea!)through the day to feel better… And by the time it’s the end of the day, I’m too drained out and my brain is dead and I just want to sleep and get up the next day and feel more like a #human than merely just a jellyfish.
Oh wait, even then. Jellyfish at least get to swim around.

This has happened a several times before (I can count on the fingers of two hands) and thankfully, each time, I’ve managed to quickly get into bed and lay flat. Of course, it’s scary to think imagine how I’d manage if it were to happen when I’m outside of home. Honestly, I don’t have an answer yet. I don’t have an answer to how I’d deal with it if I weren’t able to get to my bed in time either or if it got worse later, except to obviously call out for help. But again, I’m happy I’ve always managed to make my way to the bed and give my body the time it needed to feel strong enough.

Good thing is, I now know what works and what doesn’t and if ever I do need help, I’m at least able to guide those around me to help me with what needs to be done. I’m aware that there may (or may never be) be a situation whereby no one but the doctors are able to help, but there is a big difference between being prepared for the possibility of it happening based on experience, wisdom or knowledge versus practically believing it will happen based on fear and negative thoughts…

Frankly, the latter leads to too much stress and anxiety and I don’t think any of us needs that. Especially if we have enough to think about in our present.

2015 has finally come to an end (almost) and I can’t wait to see what 2016 has in store for me. I seriously can’t. My planner is out of pages and looking back, I feel good about what I’ve overcome and how I feel more confident owning my story.

I haven’t been writing much out here lately because quite honestly, I’ve been a super caught up with things that require my attention even more at this point. There is only so much energy we have and we must be extremely cautious about where that energy goes. I’ve been working on directing this energy towards myself and my overall health till now and the results have been…..

interesting.

Last couple of months were so eventful and as much as I would love to write about each of these events, I don’t think I have the time and freedom to do it yet. I’m at a point where action counts more than anything else and need to save my energy in every way possible. Heard of spoons? I need to be extra cautious with how I use my spoons.

I’ve learnt that it’s okay to feel vulnerable at times and it’s only this sort of a vulnerability that creates the best of relationships and connections. True friendships and relationships evolve out of being open about your suffering and pain and though I’m here writing to a large audience, I’m going to write as though I’m speaking with someone I could be very honest with.

For those who have been following my updates on ODAAT, more so on Instagram, I have to say… due to an urgent financial situation, I’m going to CHOOSE to put ODAAT on hold for a bit. ODAAT won’t be my focus at this point because my focus will be laying a stronger foundation for my healing to continue.

ODAAT will always be a huge part of me though. My Manntra has been to take it One Day At A Time and according to that, this is a situation I must deal with today.

As my life has taught me till now, we make plans and work on them and things can still go off track. Things go wrong (often they look wrong but they nudge us in the right direction), and we need to be adaptable enough to take the next best step. Often times, it’s these things that go “wrong” that really pushes you forward like you never imagined. I’m here taking my next best step towards what’s truly important to me as of now.

It would’ve taken much longer for ODAAT to finally be ready and I don’t have that kind of time on my side. ODAAT would surely have helped me with the situation but it meant a lot more than just a source of income. ODAAT was about extending help to others and it seems like life needs me to help myself first, which, I’ve learnt is always step one anyway. And as much as it hurts me to not be able to work on it, I am aware that this is MY decision, based on my priorities.

What I need to do is to ensure that I’m able to provide my body with what has been helping it. Wait. Let me correct that sentence a bit.

I want to ensure that I’m able to provide myself with what has been helping my overall health and well-being.

I can’t deny this fact – it’s when I started working on my mental, emotional and physical stateall at once, I started noticing a difference DEEP DEEP DEEP within. I’ve had to take pretty though decisions till now now and they have caused a decent amount of turbulence around me, with not so pleasant consequence so.

“I can’t go back to where I used to be… every turn a surprise… “ – A Whole New World, Alladin.

Yet, even a little bit of progress means a lot to me and just based on that, I that what I need in order for my healing to continue is my own space and time. The change you notice in yourself is not always noticeable on the outside right away. It takes years and years sometimes to see a shift in the reality around you and again, there isn’t any quick-fix to this.

After spending a year with myself, I have learnt to be okay with the fact that I might have a different set of needs and wants, and what’s important to me doesn’t have to be important for anyone else.

I’d love to list all the possible ways I find myself in a slightly better position today but let me sort out the issue at hand first and I’ll happily share it all with you later on!

You see, if I must pick between my stability (which includes the right environment for healing to take place, more empowerment as a patient, the ability to listen and respond to my body and trust it, take it slow at MY pace and not someone else’s, and most importantly BE WHO I TRULY AM) and giving all of it up in order to make ODAAT happen (for example), the truth is, I will pick stability at this point. When I have a stronger foundation, I’d be able to work on anything I choose to. Right now, I’m choosing to fix the cracks and holes in my foundation because it doesn’t work for me any longer.

The day I have that sort of stability, I swear I’ll announce it to the whole wide world and on my blog and Instagram and everywhere possible (you get the point) and throw a mini tea party at my house for my friends because I’d be overflowing with happiness and crying about how much progress I’ve made since birth up till now.

Those who really do know me for the person I am, despite all the things that went wrong, have seen how things have shifted for me in just last one year. Yep. Isn’t it amazing what just a year can do? I am still in so much pain, my joints still sublax, I am still taking daily medicines to function, I still need my slings and guards and tapes… There is still so much I can’t do and probably never will be able to.. But I’m reaching a level of acceptance which at one point, seemed impossible.

I was afraid of owning my story; now I’m not.

This, to me = progress.

To be here today, surviving through the last 25 years of my life, is a victory in itself. And just this last one year has been enough for me to find a bit of trust in myself and my journey and to keep going.

I can’t wait for the day when everything is in place and I can finally take that one huge breath that I’ve been craving for …let’s say… ages. That one breath will be yet another victory altogether. That’s what I want. I’m working towards it, because no, sitting idle won’t help. No matter how difficult it gets from here, I will get through it.

I now realize my fundamental needs WAY more than I ever did before and though I think there is still a lot left to learn (I think learning never stops, no matter what age one is at. I don’t believe that the older you are the more mature or wise you are. Sometimes experience beats age. Sometimes age beats age. You just have to continue to learn and grow. That’s just my belief and yours could be different), my story has taught me enough to never do certain things again and continue certain things no matter what. It’s been a ride full of lessons and realizations. It’s a process which adds meaning and purpose to life.

Some processes take a lot of time and I don’t believe in rushing what actually needs extra space and time instead. It’s like this ,if you have a deep cut on your finger and have a band-aid on it, you wouldn’t keep trying to rip that off, would you? You know how painful it is and it starts affecting everything, but you also know that you’re not helping the healing process if you keep touching the wound. Let it heal.It’s the same with health. And when I say health, you know what I mean now.

I also don’t believe in rushing someone else’s healing process just because you want it to be faster or think it “should” go faster. We each have our unique way of dealing with our experiences and it need not be compared. I’ve seen that the more I focus on my over-all health and well-being, the more I realize what deserves my attention and what doesn’t.

2015 has slowly but certainly propelled me forward – beyond my fears, beyond my weaknesses. It has shown me hints of the strength that lies in the core of who I am. And that’s exactly what I needed. Somewhere over the last few years, it had all faded away and I forgot I had it in me to make things happen. My condition had made me immensely dependent on those around me and it wasn’t helping anyone. Not me or them. I couldn’t be in pain in peace. And they couldn’t see me in pain. I couldn’t work at a pace that was true to who I was becoming. There were expectations and the past was eating into my present and future. It was getting messed up. Though everything seemed alright from outside, it was starting to cause further damage to me internally. I didn’t want that to continue. It had to stop.

I have never felt better; never in the last so many years. There’s still so much to figure out and though future is still very uncertain (as it might be, given a rare, connective tissue disorder), I at least know there is a way ahead.

Feeling better doesn’t mean I’m pain-free (I wish that was the case!), it only means my mind is a bit more capable of dealing with the debilitating pain caused by this illness.

The question I ask myself is, do I have the space, time and opportunity to be patient with my body and allow it to heal?

You know how they say things always get worse before they get better? I’m aware of the possibility of my body feeling the consequences of certain decisions I might have to take due to the current situation, but I am convinced I’m doing what’s right for my health. Healing takes place inside out and there is no way forward without it first being inwards.

I think I’m ready for 2016. A month in advance, I’m ready. As long as I choose to honour my health, no matter what it looks like from the outside, I trust that I will continue to make a progress.

It’s bloody exciting! It’s going to be super exhausting too but just thinking about what lies beyond this initial pain makes me want to keep going. I somehow also get a feeling that I will receive the support I may need, as I need it. Let’s see.

So everyone, if you see no updates on my blog for a while from now, know that I am alive and carving my way towards health and well-being and working on creating some amount of stability for myself. I need this more than anything else at this point in time.